Executive Summary: Kathryn’s ABR went well, and she was confirmed as deaf. Not really any other “new” news.
Well, at least THAT’S over, and—if my father was right when I was younger—we experienced some solid character development today (and put some hair on our collective chest). Kathryn developed a bit of a runny nose and then around 10:00PM a cough materialized. We arrived at the hospital at 6:00AM for an 8:00AM procedure. Each experience with Kaiser has been excellent, but the check-in process for today’s procedure was clearly not designed for toddlers that haven’t eaten in 12 hours and don’t understand the privacy needs of the guy in the half-gown in the next bed. You can’t just go anywhere you want, kiddo, and no you can’t eat anything.
Despite her runny nose, cough, and at least a dozen warnings over the phone and in e-mail to postpone the procedure if your child displays any signs of a cold, we forged ahead. This morning brought three more warnings from nurses as well as separate conversations with her anesthesiologist and the MD on duty about the increased risks of undergoing general anesthesia with a cold which ranged from pneumonia to cardiac arrest. We’re pretty sure her airway was just dry from having a breeze through her room last night (some of you know we lost our AC during this summer’s heat wave and can’t afford to replace it) and we decided to forge ahead. Besides, with an 18 month-old you can postpone these things forever waiting for various colds and runny noses to pass. So, after two and a half hours of checking in, her sedative kicked in and we had a little drunk person on our hands.
After the procedure the audiologist came out and explained her findings from the ABR which basically reconfirmed what we had learned before. We don’t have the final report in front of us, but she said that Katie Beth’s ear passages are nice and open (which probably means there’s no issue with her brain swelling). Physically, she says, KB’s ears look perfect. However, there’s no hearing in the left side at all, and on the right side she has minimal hearing at some frequencies above 95db. That’s about as loud as a jackhammer or subway train. It’s also the volume at which sustained exposure will result in hearing loss. The audiologist—who was VERY patient with all of my questions—also spoke to us about what some of our next steps will be. Katie will be fitted for hearing aides in both ears (even though the left is completely useless) for at least the next six months. Around two years of age Dr. Roya Souza says Kat will make an excellent candidate for a Cochlear Implant—if we decide to do that. Reading through the comments on that YouTube video I linked to should give you a taste of how controversial Cochlear Implants are in the Deaf community. There are good but strongly charged opinions on both sides of the debate. At best, the Cochlear Implant might restore her hearing to a level that would enable her to have conversations, but she’ll never hear very well. What we still don’t know is whether this recent change in her hearing (remember, she passed her ABR at birth and was even talking until a few weeks ago) is due to calcification in her brain. If she has calcium building up in her brain, it’s likely that we’ll see even more drastic changes in the future.
For now, it looks like some American Sign Language classes are in our near future, as well as some new friendships in the Deaf community, possibly schooling at California School for the Deaf (which is conveniently located in Fremont, not far from where Kevin works), and possibly attending the deaf church in Fremont (which shares a building with our old church).
Finally, we’d like to thank everyone again for your prayers and for your patience while we type up the Care Page and blog updates. We know it isn’t easy for some of you to wait so long for news, but it’s a little overwhelming to deal with all of the text messages, phone calls, emails, and Facebook messages from everyone individually. If we didn’t get to your message, sorry; we hope you understand.
P.S. If you are the person that was setting off fireworks in Max Baer Park behind our house last night, I hope that last one at 1:30AM blew off your fingers. Get a job and get some sleep.
Well, at least THAT’S over, and—if my father was right when I was younger—we experienced some solid character development today (and put some hair on our collective chest). Kathryn developed a bit of a runny nose and then around 10:00PM a cough materialized. We arrived at the hospital at 6:00AM for an 8:00AM procedure. Each experience with Kaiser has been excellent, but the check-in process for today’s procedure was clearly not designed for toddlers that haven’t eaten in 12 hours and don’t understand the privacy needs of the guy in the half-gown in the next bed. You can’t just go anywhere you want, kiddo, and no you can’t eat anything.
Despite her runny nose, cough, and at least a dozen warnings over the phone and in e-mail to postpone the procedure if your child displays any signs of a cold, we forged ahead. This morning brought three more warnings from nurses as well as separate conversations with her anesthesiologist and the MD on duty about the increased risks of undergoing general anesthesia with a cold which ranged from pneumonia to cardiac arrest. We’re pretty sure her airway was just dry from having a breeze through her room last night (some of you know we lost our AC during this summer’s heat wave and can’t afford to replace it) and we decided to forge ahead. Besides, with an 18 month-old you can postpone these things forever waiting for various colds and runny noses to pass. So, after two and a half hours of checking in, her sedative kicked in and we had a little drunk person on our hands.
After the procedure the audiologist came out and explained her findings from the ABR which basically reconfirmed what we had learned before. We don’t have the final report in front of us, but she said that Katie Beth’s ear passages are nice and open (which probably means there’s no issue with her brain swelling). Physically, she says, KB’s ears look perfect. However, there’s no hearing in the left side at all, and on the right side she has minimal hearing at some frequencies above 95db. That’s about as loud as a jackhammer or subway train. It’s also the volume at which sustained exposure will result in hearing loss. The audiologist—who was VERY patient with all of my questions—also spoke to us about what some of our next steps will be. Katie will be fitted for hearing aides in both ears (even though the left is completely useless) for at least the next six months. Around two years of age Dr. Roya Souza says Kat will make an excellent candidate for a Cochlear Implant—if we decide to do that. Reading through the comments on that YouTube video I linked to should give you a taste of how controversial Cochlear Implants are in the Deaf community. There are good but strongly charged opinions on both sides of the debate. At best, the Cochlear Implant might restore her hearing to a level that would enable her to have conversations, but she’ll never hear very well. What we still don’t know is whether this recent change in her hearing (remember, she passed her ABR at birth and was even talking until a few weeks ago) is due to calcification in her brain. If she has calcium building up in her brain, it’s likely that we’ll see even more drastic changes in the future.
For now, it looks like some American Sign Language classes are in our near future, as well as some new friendships in the Deaf community, possibly schooling at California School for the Deaf (which is conveniently located in Fremont, not far from where Kevin works), and possibly attending the deaf church in Fremont (which shares a building with our old church).
Finally, we’d like to thank everyone again for your prayers and for your patience while we type up the Care Page and blog updates. We know it isn’t easy for some of you to wait so long for news, but it’s a little overwhelming to deal with all of the text messages, phone calls, emails, and Facebook messages from everyone individually. If we didn’t get to your message, sorry; we hope you understand.
P.S. If you are the person that was setting off fireworks in Max Baer Park behind our house last night, I hope that last one at 1:30AM blew off your fingers. Get a job and get some sleep.
No comments:
Post a Comment